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The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)

Allan Bergman on the DD Act

Q7: The definition of the term "developmental disabilities" has changed over time, from a list of diagnostic categories to a functional definition. How has this evolved and what does it mean today?

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This has been a very interesting evolutionary process, and it's a political process that has driven – what's the definition of the term? The term was created in 1970 as a political term to bring some of the other categorical groups in. And, in 1975, we still had some people wanting to play in this sandbox, so autism got added to the list of categoricals in '75 to the others that had been added in, and then some additional other neurological conditions similar to mental retardation, whatever that meant, that might lead to lifelong impairment.

So there was another wedge or somebody to come in with a different diagnosis, not necessarily functional and say, "Well, I have needs similar to those people, I want in too." So, it was trying to be inclusive, and yet be exclusive, so it wasn't everybody. But, that got in in the amendments of '75. And, Congress, I think got wise, and Senator Kennedy particularly, and said, "You know what, we've got to figure this out, and we in Congress don't have Solomon's wisdom to do this."

The secretary then, of the Department of Health, Education and Welfare, today the Department of Health and Human Services, was directed in the 1975 act to conduct a study on the definition of developmental disabilities, in terms of – Are we being too inclusive? Are we being too exclusive?

We want to be sure that we're targeted, that we're not going to include everybody, because there won't be enough money for everybody. We want to focus on people with the most severe, or more significant, disabilities. How do we do that? And, fortunately, that was a wise decision, because Congress sometimes doesn't have the skill sets to do this complicated work.

So the secretary of the Department of Health, Education and Welfare put out a contract. The contractor was a firm called Abt Associates, a very big consulting firm in D.C. And, they went about the work and they got in professionals, and they did statistical modeling, about, "Well if we do it this way, we get this many people. If we do it this way, we get this many people. If we do it another way, we get so many people." And, what do you really want to get done here?

And, at the end of the day, they rejected categorical models. They said you would run out never, because there would be a new diagnosis, a new genetic condition, and they'll probably look like this, and then you're going to have to go back and amend it because you didn't have the XYZ syndrome in there, but they're covered, so we want to do that.

So, let's go functionally at this. Let's begin to look instead at a set of common characteristics. Common characteristics, and they moved the age – they kept doing that. Now, and this is stated, and since the '78 amendments, up to age 22. So, it used to be 18, now it's 22. Occurs at birth, shortly thereafter, but before 22, constitutes a substantial, lifelong, used to say handicap, now it says disability, likely to continue indefinitely, and requires an array of comprehensive, across the board kinds of services and supports for that individual to have a life.

And that was the recommendation from the report the secretary brought that forward. And, the kicker on the functional was, they defined seven functional areas of life. And you had to have a substantial functional limitation in at least three out of those seven functional areas.

So, clearly, what they were saying, going back to categorical, and this created many problems starting with the mental retardation world. This meant that many people with "mild mental retardation" a mild intellectual disability weren't going to be included because they probably didn't have three or more substantial functional limitations. People with cerebral palsy who were otherwise broadly covered in the diagnostic groups, the categorical groups, weren't all going to be in. Somebody who had a communication disability and maybe dragged a leg, because of some spasticity, that's not going to meet the three out of seven substantial functional limitations.

So in this definition, there were clearly people being included, but there were people being excluded who had the original diagnostic term who weren't going to get to stay. So they were in the game for a while, then they were taken out.

But with the functional definition, some people who had unique genetic disorders, if you will, who might have been out diagnostically, got in functionally, and then it began to be, okay, how do we measure this? How do we do this?

And the mistake that has been made ever since is people want this to be a clinical diagnostic term. It was never meant to be that. It was meant to be for planning, for targeting resources, for training, for capacity building, and for legal advocacy focusing on people with the most significant and, if you will, multiple disabilities that occur in childhood.

I mean, that's how I would say that, and you've got to have a lot of support needs in order to qualify, and I believe that's what Teddy Kennedy envisioned. I don't know if Jack Kennedy had not been assassinated if this might have taken a very different route. But we can't do the "what ifs." We do know what happened, and the developmental disabilities definition as a functional definition has been around now for 32 years. I don't believe anybody's going to dare to try to change it.

The dilemma becomes when that definition tries to get applied at the state level for eligibility for services. So many states began to change their division or department of mental retardation to a division or department of developmental disabilities or developmental services. And then people would say, "Well, okay, what's eligibility?" And, very often, this was cosmetic surgery. It was still mental retardation and maybe you had something else. In fact, in many states for a while, it was still mental retardation.

I remember working with a family in Connecticut, a young man about to graduate from high school, significant disability from cerebral palsy, but above average intelligence. And his parents were struggling with the predicament because a school psychologist had said, "Your son's dropping off the face of the earth when he graduates from high school because the only game in town is DMR, the Division of Mental Retardation."

And they said, "What do you mean?" He needs attendants, whatever. There's no way to get it. There is today, but there wasn't then. He said, "I'm willing to do a reassessment on your son, and I can use certain tests where he will not do well because they're timed tests, and I can get him to have an IQ of 70 or below and get him in."

His family calls me and says, "Allen, what should we do?" And I had met with them previously. I said, "I can't advise you, that's your decision. I appreciate what he is offering you. All I can say is think very carefully about what are the long-term implications if you do this." Because I figured that's not for me to… I could advise, but that's personal.

So they went home, called me back in about a month and wanted to let me know what they did. And I said, "What did you decide to do?" And they said, "You know what? We thanked the psychologist, we were very grateful. He meant well. It was very positive. We decided that the unintended consequences would be worse. Our son already had the stigma of his visual appearance, of his spasticity, of his poor communication, of his cerebral palsy, of his drooling."

I mean he had a lot of stuff that, socially, people aren't really comfortable with, particularly 20 plus years ago, and they said, "To give him the additional label of mental retardation and all the baggage that that brings, is more than we think we ought to do for him. We'll tough it out for a while, we'll work with the Department of Human Services."

And I helped, and other people helped, and eventually they got an attendant care program put in place. But that was a real challenge for that family, and they weren't the only ones. There were many other families who fell into DD. I mean, he had three or more substantial functional limitations – nobody on this earth would disagree no matter what their credentials were clinically, but the DD Act doesn't say that's what states have to do for eligibility for service, and it will never say that.

So this is for planning; it's for advocacy; its capacity building and training. And I think that's one of the dilemmas we continue to get caught up on as people hear about the Developmental Disabilities assistance and Bill of Rights Act and, "Okay, I want that in my state." They're not parallel.

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This project was supported, in part by grant number 2301MNSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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